Pelvic Pain Support Network
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Gabapentin

Has anyone tried Gabapentin for nerve related rectal pain.

I was started on 900mg a day and am now up to 2700mg a day. The highest recommended dose is 3600mg. I’m getting to the top and am worried it will stop working or I can’t go any higher. I have no side effects from this medication.

Any responses would be greatly appreciated. N

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That was a very high dose to start you with. Recommended start low and slowly build up. Gives your body time to absorb.

There is a maximum dose with this drug beyond which it has no effect. That dose is 3600. If as you say the dose you are on at present is working there shouldn't be any need to increase it higher.

Your GP will guide you.

Remember..NEVER stop taking it suddenly...always reduce very slowly

x

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Is the Gabapentin helping you? I have had pelvic pain for 13 1/2 years been through all sorts of meds, even had an implant. Still in pain. I’m on only 1800 mg maybe I should talk to my Dr and increase that. I will try anything. Very frustrated to say the least.

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Hi Lexi!!! 13 1/2 years!!!! How in the heck do u get through this? I've had severe rectal pain for 3 years and ready for a change!!!! I've tried everything out there but a nerve modulator. Don't really want to do that!!! What type of implant do u have?

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Please let me know if you decide to try the nerve modulator. I don’t know much about them. Can you explain how they work and where they are located in your body. Thank you. God bless. N

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Hi!!! A nerve modulator is implanted in whatever part of the spine or area u need. Since I have rectal pain it would probably be in the lower lumbar or upper sacral area since those r where the nerves come to a junction that relate to the rectum. Most of my problem now is that I'm hypersensitive to ANY stool in the rectum!!!! It really sucks. My rectal pain started when my pcp did a rectal exam with a scope. I felt a pop and that's when the headache in the butt started. From that point on I tried so many combinations of drugs to stop that pain which led to more ibs problems and my gi doc said he thought my pelvic pain was in my head. No it's in my ass!!!!! The ibs started on 2012 when I worked a very stressful job. Went through tests and tests and it was ruled I had ibs-c. I was fired for having to be off work a week which then added to my stress. Over the last six years I have tried EVERYTHING!!!!!!!!! So six years later and I still have ibs which I always will. I pray and pray my butt pain will get better. I'm now downing 80-100 ozs of water to keep my stool moving along!!!! I drank a lot of water before but increasing it more so my bowel movements will flush right out!!!!! I have tried every med out there. Narcotics that were prescribed seemed to make it worse. I have gotten off those meds and just waiting for it to get better if it ever will. It just has to. I have three grandchildren so far and want to be able to enjoy them!!! I haven't worked since 2012 due to the ibs and butt pain. Mornings r hell!!!! I sit on a heating pad quite a bit as that seems to help. I have tried balloon manometry to help ease the feeling!!! Been seeing a pelvic floor specialist for 2 1/2 years!!!!! Helping but not as much as I would hope. Anyway been taking the gaba but doesn't seem to be working so thinking of getting off by lowering the dose. I give up!!!!! What have u tried? This rectal pain is the worst. I have other health issues but this is the worst. I'm here if u feel like talking cuz I really like hearing from u!!! Please keep in touch.

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Hi Karen Ive had rectal pain off and on since having 2 PFR’s 14 months ago and lower back pain I had burning and throbbing vulval pain following this op and thought it was pudendal nerve pain from something surgeon had done I now think it is a herniated disc caused by my op as have shin pain and feet pain too

My colorectal consultant gave me stool softeners like Laxido and now reduced from 4 sachets all at once to half a sachet every day If I take opoids I just use more Laxido When I have rectal pain I just use Anusol suppository with no steroid which just soothes and stops the pain ( its mainly for haemorhoids) Dont use steroid cream or suppositories as they thin the skin and that can make the nerve more pronounced The Pudendal nerve lies just between the rectum and vagina and comes down your spine to vaginal area.

Hope this helps

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Hi smollyholly!!! Thank u for your reply. What the heck is a PFR? I have never heard of that and I was in the medical profession for 25 years!! Lol. I also use stool softeners and I was on opioids for 8 years!!! I'm now on a different type of opioid. Not as addicting. I've had three neck sxs and have degenerative disk disease which affects my cervical and lumbar and sacral spine. Everything out there I have tried!!! Too many to say. I am now doing more of my breathing techniques to help along with muscle relaxers. I didn't know that suppositories thinned the skin in the rectum. I've been on backofen and lidocaine suppositories every night. Umm. I will talk to my doc about that. So what is your next step? It sucks having this pain!!! Mine also will hurt due to stress!!! That's what started my ibs and now I have the rectal pain. I hate this pain!!! Sometimes it feels too much to handle but I keep on plugging away. I hope u can find a solution to your situation. Keep me posted on your progress. It's so nice to talk to people who understand!!!! It's a lonely problem to have. Best wishes to u!!!!

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Hi only suppositories with a steroid thins the skin but Anusol suppositories for haemorhoids helps to soothe or Anusol ointment as it is thicker than cream PFR is a Pelvic Floor Repair I have been a nurse for 20 years in the nhs uk

Hope this info helps

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Hi hollysmolly!!! Thank u for the info!!! What type of pelvic floor repair did u have? I've basically tried everything but that as I'm not sure it's recommended in my case. I do know that when I get stressed my muscles get SO tight that u could probably bounce a ball off of them!!!! At one point the burning and tightness was SO bad I asked my colorectal doc if they could remove my rectum. I know drastic but at the time I was desperate!!! Thank god I didn't but the pain gets so very bad I get at my wits end!!! I really hope u can find some resolution for all of your pain as I wish u nothing but the best!!!! This problem is so widespread that somebody ought to be able to do something!!! I'm going tomorrow for trigger point injections as that has helped a little in the past!!!! We will see!!!! Talk to u soon!!! Please do take care!!!

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Not sure if I replyed to the wrong person. Lol. I had DRG implant. I don’t know how I’m getting through this either.

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Hi Lexi!!! Lol. I am the right person!!! What is a DRG implant? My pain doc wants to try a nerve stimulator in my spine to see if that will help the rectal pain. We will see. I had RFA which burns some of the nerves but that didn't help. A lot of my pain is after I have a bowel movement!!! I feel everything!!! The smallest piece of stool can set me off and it burns!!!!! I get up in the morning and bam its there cuz of gravity and because I will need to poo. I hate that!!!! I would just like to go to the bathroom like a normal person!!! Is DRG dorsal root ganglion? I had that block at Stanford and did nothing!!!! There has to be something we can do!!!! Sometimes it feels like I'm the only one with this problem but I know I'm not!!!! I just want to poo and feel normal but no the burning and pain set in and bam the day has turned to hell!!! I can't go anywhere or do anything cuz I need to sit on my heating pad!!!! What a life we live!!!! I'm praying we find a solution. Btw did the implant work? Please keep in touch!!! I enjoy the talks. Wishing u a great day!!!!!

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Did the implant work is a good question. The bottom line is I’m still in pain. Quite honestly I don’t remember being in this much pain before the implant. What is RFA? DRG is not a block it’s an implant. Confused! I have pain rectally all the time. A bowel movement just makes it worse. My pain is also vaginally. Where do you live, if you don’t mind me asking. So much easier talking on the phone. That’s my generation😊

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Hi Lexi: so sorry to hear the implant did work as much as u had hoped. I'm hesitant to get the nerve modulator as it is implanted into the lower spine where it can reach the nerves of the rectum. RFA is burning of the nerves so they don't react. It didn't really work. When I have a bowel movement it is worse just like u!!!! Actually today was a really good day!!! Shock!!!! It hasn't been this good in forever!!!!! I started drinking a lot more water and stopped drinking my one Pepsi a day as I heard that dehydrates u. We will see. I live in Sacramento California and I'm 63. How old r u? I'm trying to keep people straight too!!! I would rather talk on the phone too!!!! Lol. Something has to change for us!!! It's ridiculous for us and everyone else to suffer with this pain with no answers. Like I've said. I have tried and done everything out there. I hope we can talk soon. It would be nice to talk with someone who understands!!!!! No one gets the pain!!! Especially in the butt!!! Please keep in touch as I really look forward to our talks. I probably said that already but oh well. Lol. Talk to u soon!!!

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Hi Karen, actually my real name is Marcia. My dog who I love is Lexi😊 I am going to be 65 in July. Medicare time, both good and bad. I live on LI in New York. My story as to how this started etc is much to long but after so many years I am still not giving up even though I feel like it sometimes. Really glad u had a good day, hopefully it will continue.

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Hi Marcia!!!! So glad to hear from u as always. I can't imagine having this pain as long as u have though I could be heading towards it!!! So got up today and of course the butt pain is there cuz I need to poop. Yeah it sucks cuz yesterday was a miracle not having much if any pain. I'm on Medicare now since I'm on disability from all this. It's sooooo hard to not give up. There was a time when I wasn't sure I'd make it through!!! I kept thinking of my family and how much I love them so u just struggle through. It's such a depressing pain! Like I said no one understands. I think tectal or vaginal pain is one of the worst pains!!! I've had three neck surgeries and have lower back pain due to degenerative disk disease and I'd rather have that pain anytime over rectal pain. I'm afraid to poop as that is what really affects me!! Like u too!!! God just needs to give us a break. Like I said I've tried every method or way to make this better and nothing really works. There r too many to list. I hope u can find the peace and happiness u deserve and a way to rid u of this awful malady. It's just ridiculous!!! I'm SO much of a better person when I don't have it!!! I'm tired of not being able to do things cuz of pain!!! I had taken care of my mom for the last year due to cancer and I thought once she passed I would feel better cuz a lot of my pain is also caused by stress!!! Well she did pass two months ago which has devastated me but my pain is still there. I try not to think of everything her and I went through cuz the pain kicks in. But how can I not!!! Anyway I hope we can talk sometime cuz like u I prefer the phone too!!! Yep we r old school but so much easier to talk to someone rather than text. I will keep u in my thoughts and prayers and hopefully we can get through this pain together. Take care and give Lexi a belly rub for me!!

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So sorry to hear of the passing of your mom. Remember it’s only been two months I’m sure she is very much in your thoughts. Unfortunately I don’t have much of a family so I do sometimes say what am I here for. I push myself as much as I can. I’m on ss disability. I was able to deal with the pain until I had a stroke. I was working thru it. Once I had the stroke it was all over. The pain also got worse. Lexi says thanks for the belly rub😊

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Hi Marcia!!!! Thank u for your kind thoughts regarding my mom. Yeah it's still pretty raw. I kept praying that god would take my pain away so I could take better care of my mom but that didn't happen. I did my best!!! The pain drains u of life!!! It makes being nice so much harder!!! When I had my granddaughter here the other day it was good for awhile but then the pain kicked in and my temper shortened. I'm so sorry to hear about your stroke. Shit a stroke with this god awful pain. That sucks!! I don't understand why we have this. As I've mentioned mine kicks in when I'm really stressed or after I poo. I love and hate waking up in the morning. Glad I'm awake but never know when the pain will start. Sometimes even when I stand up gravity pulls to the rectum. I'm on ss disability too. Thank god even though it's not a whole lot. I'm lucky I have my family. My husband has been great since our sexual life has been non-existent for a LONG time. He knows I'm in pain!!!! I guess after 37 years he's ok with it. Not happy but ok. If u don't mind me asking where is your family? I'm sure it's hard for u!!! My daughter has been my rock for years!!! My mom was too but then the tides changed. I needed to take care of her and that took its toll!!! Life sure is strange. I hate that we have this problem and then I think of kids with cancer and life threatening diseases and I think I can get through this!!! The day after I had the good day the next day was hell!!! I just don't get it. God I do ramble don't I. We need to talk. I will try and call u this weekend. Thank u so very much for your phone number!! It'll be so nice to talk to u on the phone!! Looking forward to it!!! Much love to u and Lexi!!

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I have pain 24/7 , I push myself as much as I can. This is my second marriage and there are difficulties. My husband does everything he can for me. I don’t know what I would do without him. I have 2 parties this weekend, unusually busy. Just hope I get through both. We leave when I can’t take the pain anymore. With the time difference, unless you are an early bird as much as I’d love to talk it’s not going to work. Best time in general is in the morning or at night. I actually look forward to going to sleep. I’m done by 9-9:30 EST. I believe you are 3 hours earlier. Talk about rambling lol. Anyway you have my number and we will connect. Will look forward to it.

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Morning Marcia!!! Hope u r doing well. Know u have a busy weekend ahead of u!!!! Thank god u have an understanding husband too!!! It really does help!!! I mean we can't help our pain!!! No one needs this!!! Yeah I do the same thing by just trying to push through. It gets so tiring though. Ugh!!! After having Tuesday be such a good day I just want more!!!! I'm going back in Monday for trigger point injections into the levator and puborectalis muscle. The last time seemed to help!!! As we know pooping is the pits!!! Too bad we have to do that!!! Lol. We took our son and daughter and my daughters kids to dinner for my sons birthday. Found out they r pregnant!!!! So excited but want to be more included in their lives but they r so into just being home with each other. I'm a homebody too but miss my son terribly!!!! We were always so close but I know things change. I'll go into this more when we talk. I get up at 7 so I don't know if 10 would work for u your time or u prefer nights? It's so nice to know I'll be able to have someone who knows what I'm going through to talk to!!! We can be each other's support system!!! I hope u can try and have fun at your parties!!! My thoughts and prayers will be with u!!!! I will talk to u soon!!! Hugs!!!!

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Hi Karen, about to leave but I couldn’t without congratulating you on the new addition, so wonderful. I know we have to talk. Tuesday is great, as long as the weather is good on Monday I help my girlfriend with her twin granddaughters. That’s the party I have today. They are one. I love them like their my own. Hope you’re having a good day! Talk soon. Hugs right back to you!!!!!

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Hi Marcia!!! I hope u can try and have a fun day at the party!!! Just do your best!!!! I'll keep that in mind and try and call Tuesday!!! Thank u again for your kind words!! I'm excited for my son sean and daughter in law ashley!!! He's going to be a great dad!! He's so loving and kind and works hard!!! I just hope we get to be a part of their lives more once the baby comes. I know daughters r close to their moms during this time but I would like to be included. They lived with us for a year and a half so I would hope so even though that hasn't really been the case which breaks my heart!!! We use to be so close!!! I know he loves me but we don't see them hardly at all like I said. Geez talk about rambling!!! Lol. I'll save that and more for our phone call. Looking forward to actually talking to u!!!! We can commiserate together!!!! Again hugs to u and please try and have fun!!! I know it's hard believe me!!!! My prayers r heading your way!!!

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Thanks for your well wishes. Actually today I was able to handle the party and enjoyed the people. I think the babies were a little overwhelmed with all the people. They wouldn’t even come to me and I see them once a week. Tomorrow may be another story. We have my step sons daughter is being baptized. Heavy family issues there. I’m not accepted as a grandmother. Will be a lot of stress there. I hope my pain is like today, bareable. I don’t need pain on top of being with people who would rather me not there. Talk about rambling, we are both good we’re thats concerned. I so understand how you feel where your son is concerned. You just need to make sure you are invited over to see your grandchild. I was very close to my son also. Things are very different now. Normally I volunteer Tue and Fri, except this week. If we don’t connect Tue, try Thurs. I’m really looking forward to talking. Stay positive!!! Hugs back!!!

Marcia

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Hi Marcia!! Glad today went well. Well when the babies r overwhelmed they sometimes don't know what to do but I'm surprised they wouldn't come to u!!! Geez tomorrow sounds like drama!!! That sounds like it's going to be very uncomfortable!!!! I'm sorry u aren't accepted as a grandmother!! God that must hurt and doesn't make sense to me!!! I'm super family oriented and stuff like that pisses me off!!! U r part of the family!!! It breaks my heart that people act like!!!! I will think good thoughts for u tomorrow!!!! I hope your pain isn't too bad!!! I've actually had another good day!!! Why can't this last? I'm trying not to miss my mom but it's been hard!!! If I think about her too much my butt will spasm like crazy!! After last nights dinner my pain level was like at a 20!!!!!! I'm thinking good thoughts for u!!! I hope u can have a good time tomorrow!! I hopefully will talk to u soon!!

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Hi Karen, What happened last night? Hopefully today will be a better day for you. You seem to have been close to your mom, just always remember the good times you had. I’m family oriented without much family if that makes any sense at all! For many years had issues with my son because of it. How do you push family on a person who basically grew up with none. I wanted so much for him to have something I really never did. Still do but have learned finally not to go there. Yeah it’s really ruff with my husbands kids. And they are not kids anymore! Today will be a ruff day, trying to relax now. Just have to get through the day. Talk soon!

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Hi Marcia!!! I'm sure your heading out or r gone but try and have a good day!!! I know it's going to be tough but at least u r lending your support!!! I don't understand people anymore!!! Your husbands kids should accept u for the loving and caring person u r!!! U make their dad happy and that's all that matters!! It's like grow up!!! So did u not have much of a family or your son? Just curious. If that's too personal I understand!!! I grew up in what I thought was a pretty good family!!! Dinners and holidays and vacations!! It all changed when my parents divorced when I was in my early 20's. From then on not much fun and then my dad passed away when I was 25. My mom and I have always been close but hers and my relationship was different than what I have with my daughter. I miss the hell out of her every day and don't always feel I was the best daughter this last year but I tried and she understood my frustration that I had at times. I know she's in a better place now cuz her last week she basically slept. Her last three days were extremely hard on her as well as myself!!!! I hate getting old!!!!! Friday night was hard cuz like I mentioned went out to dinner and the place was loud and crowded and my grandkids were kinda all over and then the baby news and then I started thinking how my mom would have loved to have heard the news and everything just flooded my body with anxiety!!!! Then of course my pelvic floor went into major spasm!!!!! It was like a 20 on a pain scale of 1-10!!!!! It hurt SO bad and nothing touched it!!!!! Anyway rambling on again. Have a wonderful day!!!! Enjoy the time with your husband and god bless!!! My prayers r with u!!! Can't wait to talk to u!!! Will talk soon!!! Hugs!!!!

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I’m very tired this AM so I’m going to send a quick message. Got through yesterday ok. Now it’s over till the next BD which is Aug. We will see if we are invited over just us before that. It is what it is. Gotta go but looking forward to talking to you. Take care of yourself. Hugs always!!!!

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I now how you feel had right sided pne for 10 years, tried everything except modulator which I may get done eventually but specialist I am seeing is trying to do a few other things first , one is going to be specialist pelvic physio and I was told it would be in 6 months and that was 9 months ago , so I am trying to find one private! Like you I have severe rectal pain and. It hurts to have any poop in the area , feels like it makes the nerve pain worse , God Karen if you and I got together we would have some horror story to tell , hey maybe we should right a book!

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I mean Marcia ( sorry Karen!)

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Try going a little higher but st small increments. Too much to fast doesn’t help. Best wishes. N

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Thank you Bananas6

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Hi,I'm on Pregablin which I think is from the same family of drugs. I've been taking 300mg for about 8-10yrs,I've tried to reduce the dose slowly because I don't think there doing the job sufficiently ,but I can't get off them. So I suppose you could call that I'm addicted. I agree with Bananas,if you do decide to WD do it slowly. Personally I've learned my lesson now,if a drug don't work for me after a month,I won't take it. You take very good care in your decision.

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Sorry to hear you are stuck coming off pregabalin Gemini71.

May I ask how you have tried? Dose, timings etc.

x

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Hi,I'm on two drugs for the same complaint,Pregablin,and Mirtazapine,none of them helped me from the start,but like I said,I was told to persist,stupid me did. Now with either one my pain gets worse the lower I WD. Pregablin you can only reduce 25mg at a time.Mirtazapine you can reduce at a smaller rate,I got down on them from 45mg,now down to 15mg,just can't get lower. All I get from the medical profession is if the pain gets worse then they are working.

BUT,I had less pain when I was put on them,and it never got any better.

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Sorry but I don't know where you heard only reduce at 25mgs for pregabalin.

The recommended reduction is 1 tablet...100 mg a day for at least 2 weeks. Then another tablet at 100mgs. If at any time you start with withdrawals then go back to the dose pre reduction. It can take months to come off.

If your pain is worse when reducing then stay on them.

If however the side effects of taking them are horrible then you shouldn't still be taking them

x

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I was sent to a pain specialist,and he said I had to come off Pregablin before he could put me on another drug,and to come off them very slowly starting with reducing 25mg at a time. It's been a while back now,but I know by the time I got down to 100mg I could not reduce anymore because of pain. So I was told to go back to 300mg,which I'm on now. As for the pain,perhaps I didn't explain myself to well. I was suffering with my stomach at the time,my GP put me on Pregablin thinking it would do the job,it Had no effect on my pain at all,when I told my GP this he said give them longer to get into your system. They have never stopped the pain,BUT because my body is now used to them,if I try to WIthdraw from them by the time I reach 100mg,my stomach pain is excruciating.

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I have never heard of nerve meds being used for stomach problems. That is a head scratcher. No wonder you never got better. Nerve meds can be very addictive. Best of wishes. N

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Hi Gemini71.

I am on Gabapentin 3300mg and 45mg of mirtazapin. As you know one is for nerve pain the other for depression. There has to be a better answer. Possible a whole new drug just for this problem. Best of wishes. N

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My story goes back years,so a lot has happened. Because I was first diagnosed with IBS,which me and my GP of the time,think that's an excuse when they don't know the problem,he sent me to see a psychiatrist,which I now think he come to the wrong conclusion,he thought I was depressed and at the time,no just fed up with pain,so he put me on 45mg Mirtazapine,later my GP,gave me Pregablin to see if that was my problem. I've got myself down to 15mg of Mirtazapine now,but my pain Specialist wants me to up it to 30mg,well no way,took me to long to get to this point. Neither have worked,just caused me more anguish. That's why I'm quite reluctant to take anything now. But like I say,long story. To answer your query I think my GP thought it was nerves.

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Is the Gabapentin working for you???

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Why couldn’t you come off? Pain returned? I tried to low my Lyrica dose and pain was worse once I reduced by 50 mg

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Exsactly same thing Pain got worse. But when I was put on it,and said it did no good,I was told let it get in your system a bit longer,well longer reached 8-10yrs.

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Do you tolerate it ok? Did it cause Any changes to your body?

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Yes I tolerate most drugs,but like I say they did not stop the pain I initially started with. But when I came to withdraw from them,the pain I started with became excruciating,so I just had to go back up on them. So I really feel I'm just hooked on them.

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I’ve heard that can happen. I’m so sorry you are going through this. N

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Not so far. Sometimes a feel a tad dizzy but nothing else. N

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I hear you loud and clear. N

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gapabentin didnt do nothing for me started low then increased to max dose. then weaned off back to low dose then started pregabalin/lyrica started low no im max dose. dont help too much.was on amityrptilne same time. on highest dose on that at night. they then tried acupuncture for 15 sessions once a week. then only had 3 day relief after. so no every 3 months final resort is along with tablets i have a lidocaine infusion every 3 months. some months works better than others. there a few natural remedies that help better than tablets though which i spoke to pain clinic consultant to drive nhs to do. but not yet he said. this os both for my fibromyalgia and pelvis pai migraine etc

Regards Sav

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Thank you for your response. I hope you find the answer you so deserve. N

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thank you

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Where in your body do you have the infusions? Where done?

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took gapapentin for two weeks had dreadful side effects dizziness , feeling faint so came off them am awaiting referral to pain consultant in Kings college -London to see if they can help

David

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That really sucks. I hope you find the correct help soon. N

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David, I stopped taking it after two weeks. I felt fatigued and really out of it. I will not take a medicine that makes it unsafe to drive a car.

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have been taking magnesium glyncinate 400mg 4 a day for a couple of weeks and seem to be helping a little. worth a try.

David

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I’ll try and find some. Amazon perhaps. Thank you. N

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I take Gabapentin for nerve pain (pelvic floor) but had to reduce dose to 30% recommended, and take another med as it attacked my stomach so much I cold hardly eat. Tried another medicine but the side effects were even worse :(

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I’m so sorry to hear that. Keep trying. N

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I have been on gabapentin for abdominal pain and I have totally lost my appetite

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Oh no. That isn’t good. Hope you find something better soon. N

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Kap710 it’s better than putting loads of weight on. I’m on Pregabalin (Lyrica) and because I’m housebound with my pain, I don’t get about much and can’t exercise, and since taking these tablets I have put a heck of a lot of weight on. Not because I eat more either because I hardly eat as it is. I hope you all sort things out. It’s a nightmare living with pain long term. X

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I have gained weight on gabapentin not a lot but for what I eat I should have lost

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Doesn’t it drive you nuts? Some times I might not eat nearly all week if I’m ill and in pain. I just drink plenty of water. Even when I do eat it’s only one small meal at tea time and nothing for the rest of the day. I should not be the weight I am but it did start when I began taking the Lyrica. So please take care. X

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Hi, I never gained weight on Gabapentin, Lyrica definitely. Actually went off it a long time ago because of the weight gain and also lack of benefit. Just by reading all these blogs everyone reacts deferently. I’m actually for the first time increasing the Gabapentin. I’ve been on too low of a dose to give it a chance. Right now I’m on 2100mg a day and will go up slowly and see if it helps at all. Worth a shot. I’m also on cymbalta and Valium and pain meds. Too much!!!! Fortunately I’m not housebound totally. Just a little fed up after 13 1/2 years. Two years ago I also had a stroke. I’m not terrible but couldn’t work after that. Ok that’s enough sorry for the babble!

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Hi!!!! I've been on 3000 -3600 a day and I really don't see a difference in my pain at all!!! I feel like I've gained weight since starting this med! I'm SO sick of rectal pain and burning!!! I've had numerous injections with no relief!!! My pelvic therapist is about ready to discharge me as there isn't much left to do since I've been going so long!!! What r your symptoms? I also have ibs so this all sucks after 3 years of rectal pain and 6 years of ibs. What other things have u tried? I wish I could have an epidural like when u have a baby!!! Lol. Can't have that cuz u couldn't walk. Who needs to walk!!! Lol. I just want the pain to stop!!!!! Please get back to me so maybe we can stick this out together. Wishing u lots of luck!!! I'm here for u!!!!!

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I’m sick of rectal pain also! Also have vaginal pain and burning. Was thinking of trying to up my Gabapentin only on 1800. I’ve had this for 13 1/2 years. I’ve also had an implant. If anyone has suggestions I’d love it!

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Hi Lexi!! What type of implant? I hope this pain doesn't last as long as yours! God help me!!! I hate having this pain everyday especially after I poop. It's ridiculous!!!! Use to manually evacuate so I'm sure that was related. I have burning too!!!! U can try going up on gabapentin. I don't think it helped me at all!!! I don't understand why all of this stuff happens!!!! It just needs to stop!!!! Talk to u soon!!!

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I had the Ganglion Dorsel Root stimulation. Sorry I also had a stroke and my memory for things is awful. I’m also going to be 65, and taking meds that effect your memory , so I guess I’m in bad shape lol

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Have you tried using a tens machine? N

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No, I’ve never used a tens machine. The implant is kinda one but more intense and inside your body.

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Hi Karen 1954

I understand totally. The rectal pain is the worst.

I have been using a tens machine. Like the ones they use in physio. I bought it off the tv. Dr Ho’s. I put two pads near my rectum and turn on the machine . It sends an electrical current to stop nerve pain. It does distract me from times when I am going crazy.

If you want more info on the tens just ask me. Best of wishes. N

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Hi, I would like more info on the tens machine.

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Hi Lexi1221. The t.e.n.s. Machine has been used by physiotherapist for many, many years. It provides a small electrical current into a muscle or a nerve bundle interrupting

the nerve pain or stimulating a muscle than relaxing it.

I don’t know where you live. I am in Canada. There is a Dr Ho who sells them on Tv but I just bought mine at Walmart for $150 but still made by Dr Ho. You can go on amazon and buy one much less expensive. Just make sure buying repayments pads are readily available for your model of machine.

If using it quite frequently the pads don’t stick anymore. Or a wire comes apart. Not being able to use anymore.

I can say it has gotten me through some rough days of rectal pain. I’m not sure if the tingling sensation is just a destruction but whatever helps, right?

Please don’t hesitate to contact me if you have any questions. N

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Where do you place the pads?

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Hi Lexi1221

I place the pads, that are quite small as close to my rectum. In between my butt checks. I take them off to use the bathroom. Place the wire upwards and your under wear will keep them in place. It is connected to a hand held device. I usually wear something with pockets when going out. I hide the excess wires in the pocket. It is really helping me. Good luck. N

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So you are constantly with the unit?Interesting!! Thank you

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Hi !I'd love to hear about the tens unit. I use to have one for my neck as I had three neck surgeries. Does it help? Where can I get one? I'm 63 so I understand meds and memory!!! It's like I get up to get something and forget what I was getting!!! Lol. I've been to Stanford for injections and my pain doc here has tried numerous injections which haven't helped. The ibs and rectal pain sucks!!!! My stress goes straight to my butt!!! Throbbing and shooting pain. My ibs gets messed up and then my sphincter goes crazy!!! I've used a therawand and that helps but it just needs to stop!!! We've been through so much at our age we don't need the rectal pain!!!! Give us a break!!!! I tried magnesium glycinate like someone on this site suggested and it messed my ibs a lot!!!!!!!!!! Didn't help with the pelvic floor at all!!!!! Anyway can't wait to hear from u and please tell me about the tens unit. Much appreciation to u!!!!!

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Hi Karen 1954

I would suggest try Amazon.com if you have the internet or someone to help you. They have a few t.e.n.s. Machines on there. Make sure you can get replacements pads for you model no. and order a few extra at the same time. They can break down after some time of use.

Contact me if you have any other questions.

Best of luck. N

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Ladies, there is a sitting cushion on the market called ‘Spoonk’. It is geared as a reflexology pad however I sit on it and the pain from my residual P.N.E. neuralgia is redirected. It hurts as first to sit on the over 1,000 plastic reflexology prongs but with persistence it does help.

Before my decompression surgery, I sat on a padded toilet seat that was raised off of chair surfaces because I glued soft sponge under the seat. I also use Kenzen brand ( from Japan ) capsaicin pain patches and apply them to my buttock and rectum.

Try to keep calm and carry on. Good luck.

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Hi Konagirl60. Where are you located. I live in Canada and have never seen a device like that.

If it my help I would like to try it. Thank you for your help. N

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I am in British Columbia, Canada. I had no support whatsoever here. I got help in Toronto and Edina, Minnesota at the MAPS pain clinic. Canada is useless in treating this. Drugs is all they offer...YUCK!

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The Spoonk seat is $40.00 at health food stores that carry reflexology healing modalities.

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I'm on Gabapentin 300 mg and have been for about 4 years for severe groin pain caused by referred pain from my spine. It's not working so well now and I have excruciating

jciating

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I’m so sorry to hear that. I hope you find relief soon. N

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skinnylizzy59

Hi. Have you tried increasing your Gabapentin mg. You can go as high as 3600mg a day. I am taking 3300mg /day and will go the max this week. In certain circumstances you can go higher. Worth a try if it helps reduce your pain.

Best of luck. N

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Talk to your Dr. from everything I’ve read 300 mg is a very low dosage., Maybe increasing would help you. Good Luck!

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Hi, from what I’ve been reading you are on a very low dose of Gabapentin. I would talk to your Dr. and soon!!!!

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Boy I’m in trouble. I already commented on what you said (I did have a stroke which effected my memory) At least I said the same thing basically lol

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Hi skinnylizzy59 I tried Gabapentin, Palexia, Endone and many others and none of them helped with my rectlal and vaginal pain, in fact one doctor told me it has been proven all of these type of drugs can and often do make nerve pain worse. I have just had a Ketamin infusion over 10 days in hopital but I haven't as yet had any relief from it. I also have a Boston neurostimulator inserted in my buttocks and it gives a small amount of relief as it disturbs the pain signal from the brain by giving off tingling sensation. Hope everyone putting up with this pain will get some relief.

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Hi stubb, sorry you've not been able to get any lasting relief from your pain. I visited my doctor and he increased my dosage of Gabapentin but no relief from pain yet. Doctor also recommended that I attend the Pain Clinic but no appointment yet.

Take care. Love Lizzy x

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I’m at 3300mg and getting scared it will stop working. I have heard of people on higher than 3600. What does to your body. I don’t trust drs and meds any more. Sad thing to say.!

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You know if it is working don’t stress over it. I would love something to work.

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I have been on it 2 years and have benefited from only 300mg twice daily combined with Cymbalta and Tramadol on bad days. I will report that I only take the Gabapentin once daily and the Tramadol on rare occasion.....no side effects except if I don't take the Cymbalta. AT FIRST SLEEPY AND GROGGY...but my body has built up a tolerance. I pray that the God of all mercy and grace will give you healing and relief from this affliction.

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Hi peters1, thanks for your reply, your condition sounds much worse than mine. Keep taking whatever gives you a good quality of life.

Take care. Love l Izzy x

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Go to a neurosurgeon and ask for a scan of your spine. If there are any defects of your vertebrae they should show The nerves can be squeezed by disintegration of the bone as you age so have to keep your back in good order Swim if you can but dont do the breast stroke and also walk against the water as this helps to strengthen

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Hi Smollyholly, thank you for your reply. I have been diagnosed with Lumber Spinal Stenosis from which my groin pain stems. I don't swim at the moment but I do an exercise class. I occasionally take Ibuprofen.

Take care. Love l Izzy

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Hi I started doing beginners Pilates since last August once a week and more exercises at home when I can I think it is doing some good I couldnt do any exercises after my PFR as had such burning throbbing vaginal pain I have gained weight around my middle due to taking gabapentin and lack of exercise I am now trying to brisk walk at least 5000 steps a day to keep me moving otherwise I would be static I dont take fizzy drinks and eat healthily I keep my calories to 1100 per day but still put weight on When Im sore its really hard Will keep trying

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Hi Smollyholly, my exercise class has an element of pilates in it, unfortunately I can't walk as I have severe arthritis in my right ankle, I use a stick sometimes just to give a bit of support and confidence. Take care. Love Lizzy xx

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Hi. I've had hip,leg,buttock, heel pain which started 5 years ago. I was prescribed Gabapentin, which helped a bit 3 x 300mg, and then Amiltriptyline 30mg which nailed it. I haven't changed the doses in all these years, and was mostly pain free with just breakthrough pains. I recently tried reducing Gabapentin down, I first cut out the afternoon 300mg, felt nothing, 1 month later took out the morning 300mg. 2 weeks later I was in a mess all my pain is back, and I have lots of burning in my chest, arms, shoulders even when I opoen my eyes in the morning. I updoised back to 3 x 300mg 13 days ago and so far they are still not working as they did.

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It's good that you have no side effects. But Gabapentin has become a widely abused drug. It produces a withdrawal syndrome and certain psychoactive effects. Moreover, you may gain weight as a long-term effect. Instead of taking Gabapentin just try pelvic physiotherapy.Because physiotherapy worked really well for me. And since you are in Canada you can find good clinics that provide pelvic physiotherapy in Toronto.

optimalrehab.org/physiother...

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Thank you. I do understand the addictive properties of Gabapentin. Unfortunately I am self employed and physiotherapy has already cost me a fortune and not able to work right now. With my pinched nerve physio can’t help with the nerve pain. I have no choice to live with the pain and try with meds to control the pain the best I can and just live with it. Not the best solution. Surgery is not an option. Stuck!!!!

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Then try to do some self-therapy. You can find it easily on the web.

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